Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

Please do @ME/CFS Skeptic It would be a useful addition to the debate.

 

In a big trial or study, I think it could be justified if lots of people who worked on the trial or study itself could be listed as co-authors. But that’s not the case here: many of these people probably had zero input or at most a few words.

 

The long list of ‘after the fact authors’ illustrates that this is not a study or critique of an academic issue rather an assertion of a group’s opinion or beliefs.

 

MEAction UK’s Response To The Guardian Article 11 July 2023

https://www.meaction.net/2023/07/11/meaction-uks-response-to-the-guardian-article-11-july-2023/

 

Superb article by Brian Hughes. There are 1500 words of 'interests to declare' in a 3500 word article.

https://thesciencebit.net/2023/07/12/the-cries-for-help-are-getting-louder-and-thats-a-good-sign/

"I have never before seen a scholarly paper where the authors’ disclaimers account for almost a third of what they have to say."

 

telegraph

 

both are taken from pressreader.

 

Sport!

I vaguely recall reading that some drugs aren’t passed by regulators because although they might be safe if used exactly as recommended, they are dangerous if used in other ways.

Similarly even if something like GET was safe if done correctly (which I don’t believe), it isn’t always going to be applied like that.

 

Can't see the Telegraph piece anywhere in the online Telegraph. Henry Bodkin has written a previous Telegraph nonsense piece on ME.

Edit - The Telegraph has a bad history of removing all the reader Comments on articles on ME. Dr Michael Fitzpatrick (a GP) wrote 2 atrocious articles after NICE was published, one positioning himself as the injured victim of demanding ME patients (a rehash of an article he wrote in 2002 trashing the CMOs WG Report) entitled:

'How I became a target for the ME militants'

the other called

'New guidelines for chronic fatigue treatment are a fudge
ME activists are delighted that ‘graded exercise therapy’ has been rejected, but I fear patients will be forced to live with their symptoms'

Readers had made about 30 Comments to one article and nearly 50 to the other. ALL of the Comments were removed from the Telegraph site some days (maybe a week) after the articles were published. I had read all the Comments, none were untoward, many were informed and critical of Dr Michael Fitzpatrick's articles.

 

There was this new post today. In terms of ME Association comment, it just contains the Dr Shepherd comment that appeared in some media articles:
The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS - The ME Association
https://meassociation.org.uk/2023/07/mea-nice-defend-clinical-recommendations/

 

Apart from the fact that the evidence for CBT and GET simply wasn't good enough to reach rock bottom to start with the thing that really put the lid on all these 'anomalies' for me was the response from healthcare professionals both on the NICE committee and at Round Table that:

'Nobody uses the treatments as described in PACE now anyway.'
To which a well known patient advocate and subsequently a well known NICE officer replied something in the line of - 'well then current CBT and GET practice has no evidence base at all.' only better phrased.

What Peter White does not seem to realise is that if anyone tries to raise his 8 arguments in a room full of intelligent people it rapidly becomes clear how hopelessly muddled, irrelevant and contradictory they are.

 

Yes, and surely this has to be the final bleat of the expiring sheep.

The story's only just relevant enough to warrant small items run online for a few hours, and not only is it full of holes, it's the only one he's got. It's unlikely he'll get it up on legs again.

 

Damn

I can't participate in the discussion atm., so I'm trying to do my bit by snailing away at my writing. But I'm reading this thread with interest on my phone. Thanks everyone for your contributions!

 

Statement from Action for ME on fb

Action for M.E.
·

As a World ME Alliance member (our CEO Sonya Chowdhury is co-chair) we have joined global colleagues in writing to The Guardian to refute the outrageous claims from a small group of researchers that the 2021 NICE guideline for #MyalgicEncephalomyelitis is flawed.
The arguments presented by these researchers have repeatedly found to be lacking, and clear conflicts of interest are not being reported in the press. The Alliance is coordinating a global response to the journal r…
See more

 

Statement signed by Sonia Chowdhury, as referred to in above post

" Nice Guideline is robust and globally supported"

https://worldmealliance.org/2023/07...jd_weGqUqwwg2glm5C9tpekQBHduZSeYCkfPX9ePuy9rc

edit:

Dear Editor,

We were disappointed by the absence of quotes or input from individuals with ME in your recent article titled “ME/CFS guidance that discourages exercise is flawed, say researchers.” As advocates for the broader disability community, we firmly uphold the principle of “nothing about us without us.”

The NICE guideline review process included input from thousands of individuals, organisations, researchers and clinicians. The researchers whose views were presented in your article were granted additional space through an extraordinary roundtable, which consequently delayed the publication of the guideline. It is essential to acknowledge that their arguments have been thoroughly examined and repeatedly found to be lacking.

Moreover, it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives.

The World ME Alliance—a collaborative effort encompassing 24 national and international ME organisations across 17 countries—stands by NICE in their rebuttal of this paper.

The patient community is ready to move on, and is eager to see resources, funding and energy put towards research projects such as DecodeME and the You&ME Registry. These initiatives have been developed with extensive patient and public involvement and offer genuine hope to individuals living with this devastating disease.

Yours sincerely,

Sonya Chowdhury CEO Action for M.E. and Co-Chair World ME Alliance,
on behalf of the World ME Alliance and its 24 member organisations.

 

That's a decent statement and avoids technical details that don't fit well in newspaper letters. Hope it is published.